Our quarterly newsletter, HI-lights, has landed in your inbox! We are so grateful for your continued support, and we are excited to share with you a little bit about what Congenital Hyperinsulinism International (CHI) has been up to over the past few months. Continue reading to learn more about our programs, partnerships, and a few upcoming events!
Sharing the HI Sibling Experience
Meet Eugene and Danielle, two siblings with a bond as strong as steel and hearts full of courage. “Rare But Just Right- My Sweet Sibling and I,” a children’s book by Chloe Koeppen exploring the hyperinsulinism sibling experience – is now available for purchase! You can learn more about this book and find a link to purchase at the HI Kids Corner! 25% of the proceeds will go to CHI.
Our Family Conference with Cook Children’s in Fort Worth, TX
In late May, CHI hosted a joint Family Conference with one of our Centers of Excellence (COE) Cook Children’s in Fort Worth, Texas. The conference was a huge success – doctors, researchers, and HI families gathered from all over the world to share their knowledge and learn from each other. The fun-filled weekend ended with an adorable performance of our educational HI song “Down and Up” by HI family kiddos and a trip to the Fort Worth Zoo. You can view a slideshow and read a recap of the weekend here, and you can view presentation slides here.
Eight Centers of Excellence Announced!
In July, we announced our eight 2024 Center of Excellence (COE) designations! Our COE program recognizes excellence in care standards for HI. HI centers from all over the world were invited to submit an application to receive the designation. To view the list of our 2024 COEs and read more, including our press release and the history of the program, visit the COE page.
Exciting Development for the LightCure Grant!
Congenital Hyperinsulinism International (CHI) is excited to announce we are part of a new 11-member research consortium called LightCure! The LightCure Consortium is developing a targeted photodynamic therapy, that one day could be a promising treatment for congenital hyperinsulinism (HI).
This project is made possible by a 72-month-long grant of just over €8.2M from the European Union research arm Horizon Europe and encompasses CHI’s work to strengthen patient engagement and raise worldwide awareness of HI and its myriad challenges. You can find more information about this exciting project here.
Representing CHI in DC!
Tai Pasquini, CHI’s Chief Research Officer, attended the Pediatric Inclusion Roundtable: Effective Inclusion of Children Early in Clinical Trials in Washington, DC. Prominent leaders from the FDA, NIH, industry, and patient advocacy shared their visions for how clinical trials should evolve to appropriately include younger participants and innovative approaches to decrease barriers to rare disease drug development in the neonatal and adolescent period. You can read more about the impact of access to clinical trials in our recent blog post about the meeting.
Elevating the Patient Voice: The HI Global Registry (HIGR)
In February, we added 6 languages to HIGR, allowing participants to complete all HIGR surveys in Spanish, French, Portuguese, Italian, German, and Korean. In the first 3 months after launching the new languages, 54% of new registry participants completed registration documents in a non-English language!
The HI Global Registry (HIGR) is the only patient-powered hyperinsulinism (HI) registry – HIGR has been quoted in and informed numerous publications, bringing us closer to understanding more about HI. Visit the HIGR page to learn more.
In case you missed it… New Article on Congenital HI Birth Prevalence!
The Birth Prevalence of Congenital Hyperinsulinism: A Narrative Review of the Epidemiology of a Rare Disease
To estimate the birth prevalence of persistent HI, a targeted literature review of studies that report HI epidemiological data was undertaken, and the strengths and limitations of each study were analyzed. You can read the paper here.
Continue reading to learn about our upcoming events!
Join us for the SWEETEST Night of the Year!
Our 2024 Sugar Soirée will be held September 28 at the Montclair Art Museum, to gather with the CHI community and celebrate and raise funds to improve the lives of children and adults born with congenital hyperinsulinism and their families. Funds raised at the Sugar Soirée will continue to support the work of CHI:
- Raising vital awareness of HI to end preventable brain damage and death from hypoglycemia (low blood sugar).
- Funding HI research for better treatments and a cure.
- Helping patients gain access to specialized treatment, medications, and supplies.
- Supporting those living with the disease and their families every step of the way.
You can read all the fabulous details about the sweetest night of the year – including our host, Be My Sugar Awardees, sponsorship and ticket information, and where to stay – on the Sugar Soirée page.
Register Today: Fall 2023 Family Conference in Liverpool!
CHI is excited to announce that our second Congenital Hyperinsulinism Family Conference of 2024 will be held in Liverpool, United Kingdom on November 14th-16th! CHI is organizing this conference with our friends at Children’s Hyperinsulinism Charity, an amazing HI advocacy group in the UK! You can register and read more information on our Liverpool Family Conference page – we hope to see you there!
Stay tuned for upcoming announcements about future CHI events!
We hope you enjoyed reading our quarterly newsletter! Thank you for joining our mission to improve the lives of those with hyperinsulinism. Whether we’re raising awareness, highlighting the patient experience, or advocating for better treatments, your support makes all the difference. If you would like to help us continue to fund our programs, please consider clicking the button below.
